Conversations with Kindred Spirits

Hear Me Roar !

My title this week is a bit dramatic, but the topic is one of the most important ones I’ll probably ever share with all of you.

I was diagnosed with Lyme disease on August 20th 2001. I remember this date vividly because it was our first anniversary. Charley had made reservations at Basils, our favorite french restaurant. Instead of enjoying a romantic dinner, we found ourselves in the emergency room of South County Hospital. I’d been dealing with a high fever and severe headache that morning and when I tried to walk, my legs collapsed from under me. So, we spent our entire day and night holding hands together in the emergency room or as I affectionately refer to it, the “We’ll get to you some time in the next decade if you’re not dead yet” room. After midnight, someone finally examined me and ran tests. A doctor informed me I had tested positive for Lyme and Ehrlichiosis, confirming what I’d known for years. I had a tick borne spirochetal bacterial infection that was attacking my white blood cells. I was given a three-week prescription for Doxycycline and sent home at 2 AM.

The diagnosis was actually a relief because I’d been living with Lyme symptoms since the 1980’s after I’d moved across from a wild-life sanctuary full of deer, the official carriers of the ticks that cause Lyme. Sometimes, I’d be so tired, I would have to stop in parking lots on the way home from work to take naps. But the hardest part for me was the memory loss and the nominal aphasia that sporadically took away my vocabulary, at times leaving me mid-sentence with nowhere to go. For a talker like me, being at a loss for words is tough to take.

I’d learned to live with Lyme for twenty years. During that time, my own doctor was unable to get conclusive results on what was wrong. Fibromyalgia? Chronic Fatigue? Heart issues? MS? And on and on and on. I had researched it myself and kept telling her I had Lyme, but the tests were always negative. So, although the diagnosis in 2001 came as a relief, the battle waged on.

A few years after my diagnosis, a Lyme disease clinic opened at Rhode Island Hospital. It was only open on Tuesdays and took months of telephone calls and messages to get an appointment. It was Valentine’s day and Charley and I sat holding hands in the “We’ll get to you when we damn well feel like it” room for three hours until someone finally called me in to meet with a doctor. He was an immunologist, but it quickly became apparent that he knew little about Lyme. He was unable to read the tests and records I had brought with me. I asked a few questions. He was at a loss for answers. I explained I’d never had the tell-tale bullseye rash and had not been diagnosed until the disease was imbedded in my body and had become chronic. He balked at that and told me I must be getting bitten over and over again. He stated that there was no such thing as chronic Lyme. I insisted I had chronic Lyme which came on whenever my immune system was compromised. What we had was a failure to communicate and my patience was wearing thin. This was supposed to be a clinic specifically funded and created to deal with what was fast becoming an epidemic in our state and this doctor didn’t know his ass from his elbow about Lyme. I asked if they’d been compiling information on their patients. He seemed to think this was a novel idea that could be something they might consider doing it in the future. I looked at Charley, got up and said, “Enough! We’re outta here!”

A year later, during one particularly acute flare, I went to a local walk-in clinic for a blood test to be sent to my GP. The clinic’s physician, Dr. James Gloor, conferred with me on my symptoms and when I told him I had chronic Lyme, he concurred. He had Lyme himself and understood exactly what I had been trying to communicate to other physicians for years. Three weeks of Doxycycline was not going to kill the spirochetes lodged firmly in my body He put me on a longer regimen of a combination of 2 antibiotics. I felt much better after only a few days.

Dr. Gloor has helped me to function and be as healthy as I can with this chronic disease. He is also the physician who read Charley’s PSA and sent him for a biopsy after Charley’s own doctor of many years had missed the warning signs. This man has saved both of our lives. He’s gone against the tide to treat Lyme aggressively and has been brought to task for it.

Recently, a researcher at Johns Hopkins in Baltimore discovered that there are aggressive spirochetes which are not killed off by the standard three-week antibiotic treatment. Like aggressive cancer cells, they keep returning after a period of remission. This proves you do not have to be bitten again to get Lyme. It proves what many of us who live with this disease know all too well – chronic Lyme exists.

On Wednesday, I received an email from LymeDisease.org The heading read: Can you imagine a cure for Lyme disease? IMAGINE A WORLD where people with Lyme disease are diagnosed and treated correctly and go back to living their lives. Hope had entered the room. I filled out the survey, sent in my data and volunteered for clinical studies. Can you hear me roaring now?!

Please share this information. Someone out there is waiting for the good news. Thanks….Clare

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74 thoughts on “Hear Me Roar !”

I’m happy you are a survivor! I have met a tick or two in my time. I have never had the tell tale bullseye. The last two times, I was told not to bring in the offending tick. But keep it if I become symptomatic. I hope there is a cure soon foot you and everyone else that lives with any disease like this. 😀

Wow, I can’t even begin to imagine how frustrating the whole journey must have been for you!! I’m so glad you were finally able to get the right doctor who knew what was going on. Thank you for sharing this information; I hope they do find a cure and soon! I hear your roar, and it is mighty!! 🙂

He is definitely someone you want on your side. A competent physician who looks at the data and figures it all out. Everyone of us should be holding their doctors accountable.Thanks and I hope all is well with your family.

Clare, this is truly an important post. I will share it on Facebook (where I have many more followers) and on Twitter (which I have just started again but in my previous life had thousands of followers) rather than my blog which is much less of a position to shout from. May I say that you are really very inspiring. Your frustration is tangible at times in this journey but you are not unkind. You are positive. My heart goes out to you and I am just so glad that you are walking wounded and not worse. I will share after the weekend if you don’t mind. Here in France and tragically, people’s minds are on other things this morning 😦 Hugs to you and those cutie pie pussy cats from L’haricot et moi xx

Osyth, such a sad time for you and others in France. Charley and I keep thinking of our wonderful experiences two years ago, walking around Paris, celebrating his birthday by the Eiffel Tower. The intense human suffering and the cruelty of it all is overwhelming right now. And we are only watching from afar. I cannot imagine how the people of France are coping with this latest nightmare within their beautiful country. Stay strong and take care of yourself. Love from all of us

Thank you. This will be of help on a national scale. People have died of this disease because governmental ignorance was chosen as the path of least resistance. I’ll keep peoplle posted on the findings whenever I get further info.

Wow Clare this was such a helpful and informative post. I never knew there was such a thing as chronic Lyme disease and so glad you were finally treated in the right way! I loved your descriptions of the clinic and Er!! You are of course an awesome writer and bring even serious stories to us in an entertaining way! 🙂 hugs

Thank you, Lynn. But you can’t make this stuff up. I think my life is filled with stuff you can either laugh at or let drive you insane. (Not far to go for me at my age) This is really big news, though. That they are admitting there is chronic lyme, finally, and are asking people to take surveys to collect data – this has never been done on a national scale before. I am really hopeful.

People who have heart problems actually die from this disease because their weakened immune systems can’t protect them. It’s an epidemic here in New England. I handle it much better now I’m retired than when I had to work every day.I really feel this is a move toward a future cure. Thanks, Amarie.

Jacqueline, it began in a town in a neighboring state, Lyme, Connecticut, traveled through New England and is now world-wide. Some people say, in the beginning, there was a cover-up because the original ticks escaped from a United States facility doing research on germ warfare. The history of this disease is fraught with cover-up if you ask me. that’s why this latest study is so important. It’s gathering information from people who have been living with it and are the best sources. I’m really hopeful. Is your cousin all right now? Did they catch it soon enough before the real damage could be done? Clare

A lot of other people have been through much worse and trying to make us all think we were wrong about our symptoms created the frustrations. But now there is finally a united front collecting real data from those who’ve lived with Lyme. Wow! We’ll see, Russ. Thanks for your message….Clare

Very interested in this post. I can relate so well to much of what you experience- chronic exhaustion, mental fog, etc. I wake every day and rejoice that I don’t have to struggle my way to work and struggle through the day- less money, richer life. I do relief work at one of the local high schools and had a girl suffering Lyme disease brought to the library (also the sick bay) having a massive panic attack- diagnosed by the ambulance crew. Threshing uncontrollably on the floor, long moments of not breathing- terrifying. She has had great difficulty being diagnosed and getting treatment,. Lyme disease is not officially recognised in Australia.
I am interested for myself- About 2003, 2004 I had two separate bites from paralysis ticks; it has never occurred to me to think of Lyme disease- there are other reasons for my own experiences. But now? I shall investigate. Because of the student’s experience I do know there is a doctor who accepts it and will test and treat for it.
Back to yourself- you accomplish so much, in spite of! I acclaim and honour you! To continue working when struggling with exhaustion and pain is in itself a huge achievement. And I acknowledge this in myself as well and at last!
Good hope for the future- stronger, more vital and more wonderful.

Kate, I’m so glad you are going to get checked for Lyme. I have found that if you’ve had Lyme and not been treated properly, it settles into your system and can go dormant until the immune system is compromised by a cold, by overwork, by an injury, by depression, etc. It lies in wait and when any of these conditions or another illness occurs, it comes out of dormancy and exacerbates the problem. That’s why it’s diagnosed as other conditions, because you actually have that illness or condition and Lyme, too. And sometimes it can just Flare up because of stress or even the weather and this is when the tiredness sets in. I find that I have a regular Flare when the hot, humid summer first sets in. When I have a Flare, I just sleep it off or take a week of antibiotics to shut it down.The trick is to be aware of what sets off the spirochetes. The medical profession here in the USA does recognize Lyme but until recently refused to recognize that it might become a chronic condition. They didn’t listen to people like me living with it.The insurance and pharmaceutical companies played a big part in continuing this myth. Now, with the recent findings by a researcher at Johns Hopkins, they cannot deny the fact that you don’t have to keep getting bitten to be infected again. It could be dormant from a previous bout of Lyme not properly diagnosed or not treated with enough antibiotics.If you have any questions at all, email me at claremarysweeney@gmail.com Take care and I hope this helps. Clare

So unbelievably frustrating for you. It always astonished me (thought it shouldn’t by now, really) how some members of the medical profession assume to know more about our bodies than we do. Good luck, I hope you are now on the way to a potetnial cure.

Between my Lyme and Charley’s Cancer, we know way too much about critical diseases in this house. That’s why we try to have as much fun as possible every single day! Your experience with the Goldfish makes you part of the select group of caregivers who truly understand what negotiating the medical maze takes. I always appreciate your feedback and encouragement and am grateful for that. Thanks, Mary…. Clare

Yvette, Thank you for that! I am tough, thank goodness. You can’t live a relatively normal life with Lyme unless you understand your own body, get an understanding of the disease and do whatever you can to limit the havoc it can cause in your life. I think this has helped me in being a strong advocate for Charley in his battle with cancer. In a way, I understand, although I don’t have cancer myself. There are so many similarities particularly in negotiating the medical maze that exists in any critical disease journey toward remission or a cure. And any findings in one disease can, many times, be applied to another when it involves the immune system. This has been an education I really didn’t want. I’d rather be steeped in literature and writing. But I embrace the knowledge and intend to spread the word whenever there’s a ray of light. And this latest news is a true ray of light that needs to be shared. Thanks for reading and commenting. You are always there to listen and it is appreciated. Clare

The body has amazing intelligence. It’s the most accurate source of health information. It’s good that yours has been validated Claremary – even if it took some years for the medicos to catch up with what you knew. The collection of data across the nation is a powerful initiative. Well worth roaring about!

Time will tell on this one,Gail. I think patient-powered research projects are the way to go if any real progress is to happen. Lyme disease research has so many obstacles to overcome, not the least of which was admitting that chronic lyme existed. Thanks for your input.

I truly sympathise with what you,ve been going through. I’ve come across a few doctors who refuse to listen to anything patient’s have to say. It was once a case of virtually, ‘How dare you self diagnose!’ This was when our youngest son had an attack of a recurring infection and we told the doctor which antibiotic he’d had. This bumtious doctor wasted days doing more tests, by which time the infection had become quite severe. Surely the treatment would have been in my son’s medical notes! In the end, that’s exactly what this doctor prescribed. I sincerely hope they find a cure for Lyme disease, but I’m glad you can now deal with it better. (I admit, I’d never heard of it, but I’ll look it up now.) Thank you for sharing this, Clare.

It’s an epidemic in New England and has traveled through to other parts of the country. Health plans, pharmaceutical companies and the government colluded to keep treatment at a bare minimum if at all. They wouldn’t admit it was a real disease for years until children began coming down with it in Lyme, Connecticut. One mother began to research it and found that the government had been experimenting with biological warfare in a laboratory near Lyme and some of the germs escaped. It is a cover-up of the highest level. But patients who have had the disease are now coming together to share and gather information to help toward a cure.

Thank you for explaining that. It’s amazing what governments worldwide think they can get away with. My husband, Nick, had heard of Lyme disease and the ticks responsible. People get it over here, too. I just hope all those unfortunate sufferers do manage to come up with enough information to help find a cure. In the meantime, hopefully your medication can hold it in check.

I don’t think we get Lyme disease here in Australia but I can understand your frustration with your symptoms and the difficulties in being diagnosed – constantly being told all your tests are fine and you should be happy that you’re healthy, when actually you feel like crap all the time, despite a good diet & exercise, no booze or cigarettes! I’m glad you at least have the confirmation & that things are happening, albeit slowly 🙂

Actually, one of the bloggers who read this post is from Australia and she has had all of these symptoms for a long time. She told me that a young girl in her neighborhood had similar symptoms and recently had been diagnosed with lyme. I advised her to get tested, too and get them to place her on antibiotics.

Yes I discovered after writing that comment that there’s a Lyme Disease Association here, & they’re fighting to get it recognised here. I think I looked it up years ago due to the symptoms, & heard that it wasn’t considered a possibility unless we’d travelled to an area of the world known for it.

Scrap the first part of my comment above – apparently that’s a controversy all of its own! Many believe you can’t catch Lyme in Australia, but there are a growing number of doctors who believe it’s possible and has happened…

What a nightmare Clare. I think its all been said in previous comments but I concur with Gail. Now with access to research, informed patients with a vested interest in their own well being can be a valuable resource for the medical profession. I’m glad you are now managing your illness.

One of my more serious posts. (I have a few in me, although I’m more comfortable with humor.). I think my continuing battle with this disease and its effect on my own immune system has helped me in researching the best treatments for Charley’s cancer. Unlike cancer, however, researchers, doctors, drug and insurance companies denied Chronic Lyme Disease for way too many years. People who had it knew they were all wrong and it’s a relief that we have a loud enough forum now to get the research needed to handle this insidious disease. Thanks, Robyn

Even Lime disease is not acknowledged by many doctors here despite the ticks which carry it being prevalent. I’m always very careful to try to avoid tick country. It seems to take a few enlightened doctors and a body of sufferers willing to speak out before research is embarked upon.

Another Australian blogger thinks she may have Lyme but has not received a diagnosis, yet. The available tests are quite unreliable and that only serves to help foster the denials.We need top-notch clinical studies like those Charley has been involved in at Johns Hopkins in Baltimore, Maryland.

Yes. Evidence from properly conducted studies is really the only way to get credibility. But it’s a bit like the chicken and the egg isn’t it? No big pharma will invest unless there’s a good chance of return on investment. So many worthy causes. So few funds to do it. Public demand for action may just be what turns the tide. I feel for you Clare.

It’s fun! We did it as a family when my girls were little. The researchers were gathering data about a link between hypertension and salt in the diet. I’m still part of a longitudinal study for bowel cancer. It’s been going since 1987. Here in Oz you can put your name down on a register at any research uni and they contact you according to sample requirements. It’s a way of contributing and also learning since they share the results.

I have misled you. Our universities have registers for those willing to take part in trials or other research projects is what I meant to say. You put your name down and they contact those who may be suitable. However, the longitudinal study is conducted through the research unit of a hospital. They asked me and my siblings to take part after my father was treated for bowel cancer there. We were suitable because both parents died of bowel cancer.
It was empowering at the time because we felt as if we could do something which might eventually lead to the prevention of the disease.

An efficient way to include and empower people in the research that needs to be carried on.I’m hoping that our state university, which is 5 minutes from my home, takes a larger role in studying Lyme and that I can be involved somehow.

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